Welcome To:samag Meetsome Families.

Frequently Asked Questions

Why should I Register with SAMAG?

The main purpose of Online Membership/ Patient registry is to collect basic information on individuals with Ataxia Disorders, Muscular Dystrophies or other Neuro Muscular Disorders (M.D), their present condition, etc. and to share this information with Scientists, Doctors and Research Centers, who will be recruiting patients for Research studies/ Clinical trials. Apart from this, one of the primary purpose of registration is to create a common platform, where all Ataxia/ Muscular Dystrophy patients, their family members, guardians, relatives or friends can contact each other, and from here they can together plan out for the future and welfare of the sufferers, like Education/ Employement possibilities, Social Security and many other issues.

One of SAMAG’s objectives is to motivate and prepare volunteers who can contribute or work for welfare of Ataxia, Muscular Dystrophies and other Neuro Muscular Disorder patients.

What is the Registration process?

You will be asked to provide your Contact Information (Name, Address, Phone number, etc.), Clinical Information (Age of onset, Disability status, if you have other disabilities, etc.).

When you have completed entering the required information, you will be asked to click "Submit" button. Once your information is submitted, a SAMAG registry coordinator will review it and may contact you for further information. It is important that you register with correct information.

Where will my information be used?

All information regarding the patients will be shared with Researchers, Scientists, and Pharmaceutical companies who are recruiting individuals with Ataxia, Muscular Dystrophies and other Neuro Muscular patients to participate in their clinical research studies or trials.

All researchers who would like to request registry data will fill out an application to SAMAG. A review committee will review all requests to ensure that information is only shared with qualified Researchers.

What are the benefits of participating in the registry?

You will be helping to facilitate the recruitment process for Research studies. This registry is a means to possibly connect the Patients with research centers.

Also SAMAG’s aim is to collect proper data and profiles of patients suffering from Ataxia or other neuro muscular disorders (M.D) from mostly Indian origin, which will help us to locate and extend any possible help/ information.

Will my information be kept confidential?

When you submit your information through SAMAG Online membership/patient registry, the data will be stored and maintained in a secure Database.

Only SAMAG registry Co-ordinators and Administrators will have access to this database. We will not release your personal information to anyone not affiliated with SAMAG or any Research center, without your permission.

Is participation Mandatory?

Your participation in the SAMAG patient registry is completely Voluntary.
Participation in this registry does not mean that you have committed or guaranteed to participate in any Research studies/ Clinical trial. This registry is simply a way for you to submit your name and contact information to researchers who will be conducting clinical research trials. Once you understand more about a specific clinical trial and the formalities required, you can make a decision about participation, completely based on your choice and consent.

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